‘Amazing breakthrough … one step closer to a cure:’ Lessons from CAR-T coverage

Perhaps you’ve heard of recent advances in using a patient’s own immune system to fight cancer.

One such therapy, getting a great deal of attention in Phase II trials treating blood cancers (like leukemia and lymphoma), is called “chimeric antigen receptor T-cell therapy” — or CAR-T.  It works by collecting the patient’s own T-cells (white blood cells which recognize foreign or abnormal cells) and reprogramming them to attack specific types of cancer cells. This therapy has been particularly successful in targeting refractory Acute Lymphocytic Leukemia (A.L.L.) in children and young adults, with remission rates quoted between 60 and 90 percent (many of the studies funded by Juno Therapeutics, Kite Pharma, and Novartis — the three major drug companies invested in this technology).

No wonder we’re seeing videos like this from an NBC affiliate in Philadelphia:

What’s commendable in this video is the reporter actually mentions “leukemia” and that this is an experimental treatment. And, at the end of the video, the anchor points out “the doctor stops short of calling it a cure.” However, then she quickly adds “but it is working in 90 to 100 percent of patients with this type of cancer.”

Which type is that? And does “working” mean remission? Or does it mean cure? … as was dangled in the lead-up to the video (“one step closer to a cure”). This is not made clear to the viewer and it is an incredibly important distinction. “Using the word ‘cure’ here would be dreadfully premature,” says Dr. Vinay Prasad, an oncologist at Oregon Health & Science University (OHSU) in Portland, Oregon.

So if parents missed the leukemia reference early in the video, and zero in on that clarion “100 percent,” they may walk away with the impression that there is a cure out there for their child, regardless of cancer type. And that this perceived cure comes without risks or side effects, since none are mentioned in the story.

And the risks of this treatment, as pointed out in an excellent article by Meghana Keshavan in StatNews, are not trivial. The re-engineered T-cells that are injected to fight the cancer can trigger what is called “cytokine release syndrome,” in which small proteins called cytokines elicit an intense mix of fever, nausea, fatigue, organ swelling and low blood pressure. The treatment is also toxic to the brain and can cause hallucinations and memory loss. Last summer 3 CAR-T immunotherapy patients died from severed brain swelling (cerebral edema).

If you think journalists taking this story to task somehow shows insensitivity to children with cancer and their families I would argue that:

1. There is nothing insensitive about asking that these families – who are under considerable stress – be provided with accurate information with which to make better choices.
2. Producing a video which references: “a breakthrough … one step closer to a cure … and a matter of months to FDA approval” is beyond insensitive, and actually potentially cruel, when it gives no sense of what those terms mean or who they apply to.

Some context is important here. The remission figures of 60 to 90% are for A.L.L. in children only. Furthermore, up to half of those cases relapse. We are talking about a cancer subtype that represents less than one percent of all cancers. Andrew Pollock in his excellent article about CAR therapy (nytimes.com; August 1, 2016) also had these cautions: 

• The CAR therapy works now only for patients with some B-cell lymphomas and leukemias, which account for only about 80,000 of the 1.7 million cases of cancer diagnosed in the United States each year. It has not been successfully used to treat malignancies of the lungs, breast, prostate, colon or other organs.

• Because it is personalized, cell therapy is likely to be frightfully expensive — probably hundreds of thousands of dollars per patient, though the companies bringing these treatments to market have not yet said how much they would charge.

But all that wasn’t in the video was it? Are we asking that producers make their videos unwatchable by cluttering them with detail? Absolutely not. But if they are going to contribute to “miracle-mongering” by making “breakthrough” claims they should, at the very least, provide links to important information whenever and wherever they post their video.

[Note: We always strive to go beyond criticism and offer help for journalists who want to do better; here are “Six tips for writing accurately about cancer immunotherapy drugs” by deputy managing editor Joy Victory. Finally, it’s worth noting that it wasn’t just the NBC affiliate in Philadelphia that employed “breakthrough” terminology. As you can see from this tweet, so did the Children’s Hospital of Philadelphia]